Chronic pain is a major unmet global public health challenge and can have a devastating effect on the lives of those it affects and those around them. It is estimated that up to 20% of the UK population suffer chronic pain. As a result, this also represents a major challenge for the UK economy.
To help address this challenge, a multidisciplinary approach is needed to generate a better understanding of the underlying mechanisms, as well as associated biological, social and economic factors that contribute to pain. As a result, the hope is to develop improved treatments that will ultimately improve the lives of people living with pain conditions and their families.
The Advanced Pain Discovery Platform (APDP) is a 5 year, £24 million initiative funded through the government’s Strategic Priorities Fund and delivered in partnership through MRC, ESRC, BBSRC, Versus Arthritis and Eli Lilly. The APDP aims to deliver a consortium-based platform of national scale, generating discovery and early translational science that will break through the complexity of pain and reveal new treatment approaches to address a wide spectrum of pain conditions.
As a part of the UKRI and Versus Arthritis SPF Advanced Pain Discovery Platform (APDP) initiative we are launching a call for proposals to establish a pain research data hub that will be embedded within the broader infrastructure and network of Health Data Research UK.
The aim of the data hub as a platform is two-fold. Firstly, it will work to bring together, curate and improve existing data sets that are valuable to the chronic pain research community.
Secondly, the data hub will be central to all data and results generated from across the APDP investments, including the large consortia and research programmes. This will provide a key national resource for the pain research community to tackle the long-term research challenges in understanding the complexity and unpredictability of pain and reveal new and improved treatments across diverse chronic and debilitating pain conditions.
The pain research data hub will work in partnership with each of the APDP investments to facilitate working across different types of data (molecular, cellular, phenotypic, administrative, health, social data and so on) and will support industry partnerships, thereby helping to drive translation to health improvements.
Health Data Research UK (HDR UK) was established in 2017 and is the national institute for health data science. It aims to unite the UK’s health data to enable discoveries that improve people’s lives. This call is for funding to establish the pain research data hub within HDR UK, providing complementarity activities to the existing portfolio of Health Data Research Hubs.
Embedding the data hub within the established infrastructure of HDR UK provides a number of benefits, not least the access to a range of relevant expertise and the opportunity to participate in the development of standardised processes to improve safe access to health data and data linkages.
The hub will adopt the HDR UK brand, offering a trustworthy approach for the public that is recognised by industry and at a national level in policy development. Partnership with other hubs in the network will also be facilitated, providing opportunities to share best practice and deliver collaborative projects.
About HDR UK – UK Health Data Research Alliance and Innovation Gateway
The UK Health Data Research Alliance was established in February 2019. The purpose of the Alliance is to bring together and facilitate partnership working across NHS organisations and other health data custodians, leading to an ethical, consistent approach to data provision and public engagement.
The Alliance coordinates the identification and adoption of standardised tools, techniques, conventions and technologies for the use of healthcare data for research and innovation in a trustworthy way. The members agree, with public participation, best practice and standards for governance and privacy. The Alliance is working closely with NHSX, NHS Digital and NHS bodies in the devolved nations to support the alignment of policy for health data research.
The data custodian organisations that contribute to the pain research data hub will be required to become members of the Alliance, adhering to Alliance principles of participation. In this way, membership of the Alliance will continue to grow, and the new data assets produced by the hub will be discoverable and accessible through the common UK Health Data Research Innovation Gateway (the ‘Gateway’).
The UK Health Data Research Innovation Gateway provides a common access point for industry, academia and the NHS for discovering, accessing, linking and analysing data for research and innovation. This includes national aggregated data (from existing Alliance members) and new curated data provided by hubs and other members of the Alliance.
The Gateway supports interoperability, common standards and secure data provision across the hubs. The Gateway contains no personal identifiable information (PII). All PII is retained by the data custodians to ensure General Data Protection Regulation compliance.
The Gateway is underpinned by a consistent governance framework. It links with Safe Havens (also known as Trusted Research Environments) which provide secure access to de-identified data for further analysis of sensitive data within the NHS. It provides opportunities for research and innovation, in a safe and ethical manner, that protects privacy and creates a range of possibilities for linking this data with others to develop even greater insight.
The Pain Research Data Hub will be funded as a part of the UKRI/Versus Arthritis Advanced Pain Discovery Platform, however it is expected to align with the overall vision of Health Data Research UK and to become part of its wider network. This involves aligning with the principles of participation and contributing to the Alliance and the Gateway. This approach builds on the Digital Innovation Hub scheme funded by MRC through the Industrial Strategy Challenge Fund.
The newly-established Pain Research Data Hub will be expected to work collaboratively with the other Health Data Research Hubs in a single UK-wide network and with other components of the relevant national health data landscape.